Re: [MOL] Tommy's donor backed out/Pat/update [03096] Medicine On Line

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Re: [MOL] Tommy's donor backed out/Pat/update

Hi Pat,

You might have seen some of the posts that indicated you have to pay money to 
become a bone marrow donor.  The story behind that is that there are many 
many donors for caucasian patients who need a transplant.  Unfortunately, 
that is not true for most minorities, so at this point, the funding that is 
available for testing/typing BMT donors is only avaialable to the groups that 
are in dire straights.  Although being a donor doesn't mean you have to match 
blood type, it appears that there are stronger matches if you belong to the 
same race as the donor.

For example, after Tommy's donor backed out, they went back to the BMT 
registry and found 10 more potential donors, who matched 5/6 of the 6 
antigens they look at when trying to identify a match.  The 6th one is a "b" 
one, which the doc says isn't a show stopper when it comes to transplants.  
Even though the woman who was originally identified as a donor was a 6/6 
match, I was told there are some concerns regarding female to male 
transplants, especially if the female has had children.  I don't know why.  
It's not such a big deal for female to female.  This info is all second hand 
so far.  I haven't had time to research it at all yet.  

So maybe this is the message we were supposed to get.  The first time Tommy 
was poised for the transplant (this past Feb) they found an infection that 
stopped it.  This time, the donor backed out.  Maybe he's not supposed to get 
this donor's bone marrow?  Who knows... but it's helping us make lemonade to 
rationalize it that way.

They are asking him to stay close to Stanford.  They will alert the top 5 
donors of the 10 that this is a "life and death" situation and see what 
happens.  You still have to go through a bunch of tests after you get 
selected as a donor to determine how close a match you really are.  They only 
do basic testing with the first pass to develop the potential list of donors. 
 If none of the first 5 work out or respond, they will go to the next 5.  
They are hoping to work through the list within a week or so.  It takes about 
4 months to extract enough marrow for one of the transplants where you 
receive your own bone marrow.  The docs don't think he has that much time.  
Not without treatment.  They think if he's not treated, he'll relapse.  It's 
a catch 22 situation.  They have to give him chemo or a transplant to keep 
him in remission.  When they're giving him chemo he can't donate marrow for a 
transplant later.

So, back to your question Pat...  anyone between the ages of 18 and 60 can be 
a donor.  You have to be reasonably healthy.  It is not a small thing to be a 
donor.  Although extracting the bone marrow is usually an outpatient 
procedure, they often use a general anesthetic and basically extract marrow 
from the donor's hip, which means punctures in the hip bone to get at it.  
You are sore for a few days.  You have to be really careful if you are 
selected as a donor.  The last week before you donate, the recipient is on a 
chemo/radiation regimin that cannot be stopped.  So you have to protect 
yourself from anything that might delay the transplant (like illness).  
During that week of prep they basically kill off all the recipient's bone 
marrow to make way for the new marrow.  If there is no new marrow to 
transplant, I'm pretty sure the recipient dies.  At least that's how the 
procedure has been described to me.  

So, it's well worth thinking through before signing up to be a donor.  And as 
to the $$ to join the registry, that's a personal situation based on each 
person's circumstances.  But at least you know why some are charged and some 
are not.  Also, if someone is doing a campaign to find a donor, they 
sometimes will be able to come up with the funding to do a bunch of 
tests/typing.  In those cases, no one who comes to one of these drives are 
charged.  Once you are selected as a donor, the patient's med plan pays the 
costs associated with donating.  They usually extract the marrow at a 
hospital close to your home and airlift it to the recipient's location so the 
donor doesn't have to travel.

Hope this helps explain things.  At least as much as I understand so far.  
And thanks again everyone for all your support.  I am still numb, and don't 
know what I'd do without you...

Love, hugs and prayers,  Kathy Q
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